Monday 4/5

The day started well for Kathy, although her night time nurse said that she was awake most of the night and could not get comfortable. Because of being up most of the night Kathy's HR and BP were up a bit higher than yesterday, but for a portion of the night had dropped below 100 with stable BP. As soon as I got into the room Kathy asked me to pick her up and give her a hug (that felt good). Sometime in the night Kathy asked for the nurse to call her mom with a request for shampoo, deoderant and a razor to shave her legs. Later on in the day it would be a mini spa day.

Kathy's neurologist arrived around 7:30am and was duly impressed with her progress, he asked twice "has it been nine days, is that right?". There was additional strength in her hands this morning, not alot but enough to be noticeable. Soon after that the Critical Care Unit doctor, who is responsible for weaning her off the ventilator, arrived to do some testing of respiratory function and subsequently lowered her O2 level to 50%. Kathy has maintained good oxygen saturation all day with the new level. The last doctor to come in was the infectious disease doctor who is treating Kathy's minor case of pneumonia. He plans to leave her on antibiotics for four more days. Her white blood cell count is still normal and chest x-ray is almost totally clean.

Steps for the next few days are for the doctors to aggressively wean Kathy off of the ventilator. Once she is off the ventilator they will let her rest for a day before doing a PT/OT eval. This evaluation will help determine how much and what type of rehab she will need. I had a long discussion with Kathy's case manager today regarding this next step and what Kathy's options will be. I learned through this conversation that all decisions about what happens next depend solely on Kathy's stability, how quickly she is able to come off the ventilator, and her functionality once she does. Her family and I are pro-actively seeking out the best rehab facilities and attempting to be prepared for where Kathy will go next but nothing can be decided now.

Towards the late afternoon Kathy was a bit more uncomfortable than earlier in the day. Lots of pain all over her body and pressure in the belly area. Her emotional state was beginning to decline a bit. I think her lower sedative level leaves her more awake and aware and constant contact with her family reduces her stress but also keeps her awake. There are visiting hours for the CCU and this causes a bit of anxiety for both Kathy and everyone who is here and wants to be with her 24/7. It is VERY hard to leave when those times are up. Her anxiety level was peaking towards the end of the day, prompting us to move to the waiting area until the nurses could get her anxiety back down and attempt to have her rest.

One week ago, Kathy's neurologist told me "it is going to be good for a while, then it will feel like someone punched you in the stomach". Leaving her in the room is like being punched in the stomach.